154 weeks since diagnosis

Last week we had a winter visiting our neighbourhood. Although  it wasn’t American  polar vortex but just small frost and snow – it made our life a bit difficult. It is even more difficult for Inga – frozen wheel rails made her fingers very cold, winter jacket limit her hands movement, legs get cold faster […]

153 weeks since diagnosis

Last week Inga and her mum spent one night at hospital – doctors have ordered sleep study. Results would show how much SMA affect Inga’s breath and if there is any need for breath support at night. Inga was plastered with many sensors, which were connected to computer and monitored for 12 hours. Our brave […]

152 weeks since diagnosis

Last week Inga had several hospital appointments related to being in clinical trial. So, among others, she had basic neurological examination, ECG, blood tests, ophthalmological tests and physiotherapy assessment. Inga was very brave during all test. She says she hates blood test, but she hates eye drops most. Although she does not like most of […]

151 weeks since diagnosis

This week Inga has many hospital appointments related to clinical trial she takes part. She is very brave and we will write more about that very soon. As promised last week we would like to show you happy Inga when she was “hiking” in mountains. Christmas trip to North Wales was very joyful for her. […]

150 weeks since diagnosis

Although it is a week already since new year’s party we still think about previous year. From our perspective it was a very good year. In January 2018 we were in Milan doing everything possible to enrol Inga into clinical trial. This “big day” came on 22nd May and since then we could count weeks […]

3rd Christmas since diagnosis

Dear all – we would like to wish you lovely Christmas full of hope, healh and happiness. It’s first Christmas since diagnosis when we look forward into future with big hope for cure SMA due to treatment Inga got in Milan. We believe drug will give her strength she needs so much. We are so […]

147 weeks since diagnosis

This week there has been a huge announcement for the SMA community in Poland: The Minister of Health has declared that since the beginning of a new year the first world registered drug on SMA (Spinraza) will be reimbursed by national health service. We enjoy the happiness of hundreds of families affected by this disease […]

146 weeks since diagnosis

There are some weekends between those spent in hospitals or physio camps that Inga is at home. We play board games then. Recently Inga was given with “Story Cubes” i we must admit she wins every round. All you need to do is to make up a story based on pictures you find on cubes […]

145 weeks since diagnosis

Today, the 3rd of December, we celebrate International Day of Persons with Disabilities. It was proclaimed by UN in 1992. The observance of the Day aims to promote an understanding of disability issues and mobilize support for the dignity, rights and well-being of persons with disabilities. We have never thought before about these issues but […]